I was on my knees, on the hospital floor, rocking myself back and forth, begging someone – anyone – to help me out of the unimaginable situation I had found myself in.
Nobody could. It was up to me. Nobody could save me any more than I could cure my youngest son Bailey of his life-limiting genetic condition. His diagnosis was still ringing in my ears, “Laura, we have the genetic test results and Bailey has cystic fibrosis.”
In 2018 we had been blue lighted to Great Ormond Street Hospital in London due to Bailey, then just four-days-old, having a distended tummy and blocked bowel. The next two months were a blur of operations, blood transfusions, stomas, medical diagnosis, magical doctors, tears, trauma, and two broken-hearted parents torn between their three sons, consumed by guilt, grief and utter disbelief.
Cystic fibrosis (CF) is a genetic condition affecting the movement of salt and water in and out of cells, causing a build-up of thick sticky mucus in the lungs, digestive system and other organs. Life expectancies are getting longer, and currently half of people with CF live past 40. There is currently no cure.
Life as I knew it changed forever and I had to find a way to grasp both myself and the uncontrollable situation that was unravelling before me. So how did I peal myself off that hospital floor, and stand up again? How did I help myself, and build the strength to come to terms with all that happened and everything that was to come?
It took a lot of time and a permission to focus on myself. Yes, I had three children to care for, but to be the best mother possible I had to allow myself to grieve for what should have been and accept what now was. I let new, happy memories flood in to overpower the guilt and sadness that had engulfed me.
I don’t believe you go back to the person you were before your child is diagnosed with a life limiting condition, so you need to equip yourself with tools and techniques that help empower you to establish your new self.
Unbeknownst to me back then, the first step in this process was journaling. When my elder sister gave me a notepad and pen during Bailey’s nine-week hospital stay, I used it to journal every day. This was the most valuable tool to help me rationalise all that was evolving, and to vent my emotions privately and without judgement.
I never dreamt that one day I would use this journal, one I had hidden under my bed never to be seen or shared by anyone, to write a book to help other parents. However, it was invaluable in writing my new book, Unconditional Love, and taking myself back to read and re-read as part of my Cognitive Behavioural Therapy (CBT) sessions to help normalise all that happened during those traumatic days.
That’s my second essential self-help tool; CBT. This no-nonsense, practical therapy was something that saved me in my darkest hours once we arrived home. In theory, life was back to ‘normal’ because I was home with my husband, Kev, and three sons, Harry, Mylo and Bailey. However, life was forever altered through the trauma and the life-long diagnosis. The situation hadn’t changed – we had just moved locations from hospital to home.
I relied on CBT to overcome the trauma, accept cystic fibrosis into our lives and find ways to normalise what was so alien and unexpected. I needed to find a way forwards to keep up with life, and until I took up these sessions, every day felt heavy, hard, and dark. CBT helped me rebuild myself.
Running was also a vital coping strategy. I took my kit and trainers to the hospital and ran whenever we hit a challenging day. I continued to run when we got home, as a way to get some head space from the busy life of a mum to three young boys, but also to find peace in nature and release my anger and frustrations at the helplessness I felt. It doesn’t have to be running of course; power walking, swimming – whatever your preferred exercise.
Managing hospital stays also became a way in which I regained control. Ordering online food shops for home, putting a clear, exciting childcare plan in place, bringing in essentials to hospital such as my own mug, pillow, and laptop, and having a celebratory meal to look forward to when we got home.
Taking back control of seemingly insignificant elements of my life allowed me to feel like I was in some small way in charge during a time when I had lost the ability to feed and care for my newborn, as well as mother my older sons, who were back at home without me.
These tools, and more, have helped me become stronger than before cystic fibrosis came crashing into our lives. Through my newfound journey and strength, I now use my experience to help support other parents enduring a medical diagnosis for their child through my book Unconditional Love. I hope it offers some comfort so they don’t so feel alone, and helps them build their new self.
Unconditional Love shares Laura’s story of her son’s cystic fibrosis diagnosis and the heartbreaking journey she found herself on, complete with comprehensive support guides, co-authored with specialists, to provide practical advice for parents.